February 2019 Newsletter

From the Director's Desk - Knowledge and health are powerful allies.

Dear Reader,

Following the announcement that Zero Breast Cancer is launching a search for a new ED, I received many kind, and some concerned, emails. There were also many messages that expressed continued support for the mission of Zero Breast Cancer. Thank you for your kindness, your concern (nothing to be concerned about) and your confidence in and support of ZBC and its mission!

Does the notion of health care rationing ring alarm bells for you? What can you do about it? One solution is to double down on informing and educating people - especially those who have less schooling and less access to resources or who speak a language other than English - and empowering them with information that is evidence-based, easy to understand and act upon and focused on in order to prevent health problems before they arise is much as possible.

On February 13th, 2019 the JAMA (Journal of the American Medical Association) Network published an editorial titled 'Rationing of Health Care in the United States. An Inevitable Consequence of Increasing Health Car Cost' by Howard Bauchner, MD.

This paragraph in particular resonates. ZBC prefers to follow the broader approach, i.e. that understanding the role of the social determinants of health is key to understanding health disparities. How individuals and communities can - or cannot - take charge of reducing their breast cancer risk are closely interlinked and an important lens to look through.

"Rationing of care often is part of the larger discussion of disparities in health care. Healthy People 2020 defines a health disparity as “a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on their racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion.” Disparity in health care is often used as an inclusive term, including differences in health outcomes, which is not only a product of access to treatment but also social determinants of health. Social determinants of health, for example, the quality of education and housing, are largely outside of the general focus of the health care system, although that is changing with an increasing commitment to population health and renewed interest in the inextricable link between social determinants of health and health outcomes. Disentangling and differentiating among health disparities, health outcomes, rationing of care, health equity, population health, and social determinants of health represent important challenges."

Some critics say awareness is not sufficient to prevent health problems but neither should it be dismissed as irrelevant. Did you know that inherited breast cancer risk arising from BRCA 1 & 2 mutations is much higher in the Ashkenazi Jewish population (1 in 40) than in the general population (1 in 400)? Did you also know that without a family history of breast or ovarian cancer genetic mutations might arise that may then be passed on? Although this article in Prevention focuses on ovarian cancer risk rather then breast cancer risk, it does a good job in points 1 through 6 in explaining the origin, prevalence and role of these mutations that increase cancer risks. If you think any of this might possibly apply to you its important to discuss with your doctor and ask for a referral to a genetic counselor if that is appropriate for youl

Pregnancy and decreased or increased breast cancer risk.

In December 2018 Molly Walker, Staff Writer, MedPage Today reported on a new study published on December 10th in the Annals of Internal Medicine on Breast Cancer Risk After Recent Childbirth: A Pooled Analysis of 15 Prospective Studies, by Hazel B. Nichols, PhD ; Minouk J. Schoemaker, PhD et al. The findings of this meta-analysis are that "Compared with nulliparous women, parous women have an increased risk for breast cancer for more than 20 years after childbirth." Also that "Health care providers should consider recent childbirth a risk factor for breast cancer in young women". You can read Molly's full analysis of that study here.

I share this for two reasons. Firstly, because some risks may be modified and others cannot. Age and gender for example are both significant breast cancer risks that cannot be modified. Pregnancy is a modifiable choice but the topic is loaded enough to begin with - without adding breast cancer risk into the conversation!

Secondly, there are limitations on the research noted by the authors themselves so this is perhaps not the last word on the topic. For now the most practical question seems to be what implications this study might have for breast care and breast screening for young mothers who would not normally be considered eligible for routine screenings. In general ZBC does not focus on screening because it is neither breast cancer risk-reducing nor preventative but we do share information that breast-feeding is risk reducing. This study suggests some new complexities with respect to what was considered settled science. At this time we will not change our message but we will continue to monitor this issue. Breast feeding has plenty of well studied benefits for both mother and infant.

Lymphadema in the news

"She Survived Breast Cancer, But Says A Treatment Side Effect 'Almost Killed' Her" is the dramatic headline of an article written by reporter Patti Neighmond for npr.org a little over a year ago that just came to my attention. This condition can be a very serious side effect of breast cancer surgery and treatment for some survivors. Yet another opportunity for education and awareness and some promising surgical innovations being developed that might make this a much less serious problem going forward. At this time however this is a very telling example of how health care disparities can exist and even widen. In this case a treatment that requires very highly trained and skilled surgeons in limited supply and effectively not available to people who lack really good insurance or unable to access treatment at top medical facilities. You can read the full article here.

DDT (a pesticide) and breast cancer risk

In 2015 ZBC honored the work of Barbara Cohn, PhD, Director Child Health and Development Studies at the Public Health Institute with a Community Breast Cancer Research Award for her epidemiological work. Dr. Cohn studies the health effects of exposures to environmental chemicals and also studies how pregnancy affects the health of mothers. Her work on breast cancer and the environment includes one of the only studies to consider the significance of young age at exposure on the relation of DDT exposure to breast cancer, based on the breast cancer experience of CHDS mothers (study participants). Although DDT was banned in the USA in 1972 it is still widely used elsewhere in part because it is very effective in controlling for malaria. Dr. Cohen's work is important for many reasons including its ability to potentially highlight health care disparities in Africa and Asia.

On February 13th, 2019, Dr. Cohn and collegues published a new paper in the Journal of the National Cancer Institute. I quote from this new paper "Prior findings in the Child Health and Development Studies (CHDS) are consistent with experimental evidence showing that timing of environmental exposures during susceptible windows including in utero, childhood, puberty, and pregnancy cause varying dysregulation of breast/mammary gland development that can result in cancer later in life." You can read the paper published in 2015 here.This latest paper looks at the timing of exposures (in utero vis during infancy) and whether they are associated with increase premenopausal or postmenopausal breast cancer risk. You can read the full paper here.

Zero Breast Cancer is currently working with Dr. Cohn and her team on creating a campaign to translate and disseminate this science into breast cancer risk reduction messages specifically for young men and women of childbearing age. As this work evolves we will provide progress updates.

How can you help?

In closing I want to share that ZBC has started work to share information more widely than ever before. This will be done by harnessing the power of digital tools and strategic investments to reach more targeted audiences based on age and stage of life and a geographically wider audience.

For the next three months our focus will be on the Girls' New Puberty campaign in English which now includes many components (assets): an infographic, an engaging interactive micro-site, a series of short narrated videos and a soon-to-be-completed eBook in PDF form. The plan is to track progress in real time and monitor which of these different offerings are most popular. Follow up with our target audience to asses what information they have absorbed will be possible and important. We even hope to discover if they have made any changes based on what they have learned.

As this initiative becomes more fully formed, we will keep you posted and you may start to notice some changes in how we share information with you. You can help by reading emails and participating in feedback surveys from time to time. Your feedback will be very helpful so thank you in advance!

Yours in health,

Rose Barlow

Executive Director,

PS Please consider becoming a monthly donor here. Your meaningful and regular gifts throughout the year ensure that evidence-based breast cancer risk-reduction information can reach more people, especially those who are under-served in this regard. No contribution is too small so please consider $10 a month, $20 a month or more to make an even bigger impact.

This is the first work of fiction (about inherited) breast cancer risk that we have reviewed. The protagonist, twenty-five year old Lacey Whitman learns that she has inherited a genetic mutation that significantly elevates her breast cancer risk. The author Georgia Clark hails from Australia, has written three previous books and lives in Brooklyn. The author herself is not at risk from BRCA 1 or 2 and has not personally experienced preventative surgery. In her acknowledgements she describes how she learned about this topic from peers who were living with this risk and actively considering their options to have prophylactic double mastectomies. The author spent time with nationally known experts in the field to increase her own comprehension and understanding to inform her creative process. Knowing that the author did good quality research and had medical and other experts vet her writing means that although the story and the characters are fictional the embedded science and descriptions of procedures are reliable and, for someone in a similar real life situation, they may even be useful. A funny human work of fiction might be an easier way to absorb and work through a serious health choice situation than a more dry and scary work of non-fiction.

In this month’s Get to Know ZBC Partners series, we interviewed Ian Walker, owner of Hurricane Images. Ian's health education expertise combined with his skills in editing videos and sound recording have been an invaluable asset to the Girls’ New Puberty campaign. He created the Youth Advisory Board videos for the Girls’ New Puberty microsite, which are also available on YouTube in English and Spanish. Then, he recorded the narration and edited the videos for our animated tips series in English, Spanish, and Chinese. We are always grateful for his support of ZBC’s mission and are excited to share his background and insights with you.